Registry Study on Rare Cancers in Korea
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Rare Cancer. Basic parameters: from 19 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- South Korea
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
This study aims to determine the participation rate of patients with registered rare cancers in clinical research.
Detailed description
Data collection includes:
* Clinical characteristics (diagnosis, treatment information, primary/metastatic sites, staging, gender/age) * Survival information (diagnosis date, recurrence date, death date, disease progression) * Pathological information (diagnosis, genomic information)
Primary outcome measures
- Establish a registry [Time frame: 1 year]
Secondary outcome measures (1)
- Clinical trial registration rate (%) [Time frame: 1 year]
Eligibility criteria
Inclusion criteria
- Adults aged ≥19 years
- Confirmed rare cancer
- Life expectancy ≥3 months
Exclusion criteria
-Serious or unstable medical/psychiatric conditions
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Other
Study locations
South Korea · 1 center
- Severance Hospital — Seoul
Publications
- Gatta G, Capocaccia R, Trama A, Martinez-Garcia C; RARECARE Working Group. The burden of rare cancers in Europe. Adv Exp Med Biol. 2010;686:285-303. doi: 10.1007/978-90-481-9485-8_17. PMID 20824452
- Very rare cancers--a problem neglected. Lancet Oncol. 2001 Apr;2(4):189. doi: 10.1016/s1470-2045(00)00273-4. No abstract available. PMID 11905758
- Pritchard-Jones K, Kaatsch P, Steliarova-Foucher E, Stiller CA, Coebergh JW. Cancer in children and adolescents in Europe: developments over 20 years and future challenges. Eur J Cancer. 2006 Sep;42(13):2183-90. doi: 10.1016/j.ejca.2006.06.006. PMID 16919780
Identifiers
NCT: NCT06746766 · 4-2024-1207 · 4-2024-1207